Muscles in legs

[[be...]]

Does anyone feel like they have constant muscle movements in legs?

Muscles in legs spasm a lot and feel they are constantly moving around. My legs are so stiff and sore with numbness.

3 emg say no neuropathy.

I wish I had never mentioned benzos to my neurologist because now I feel he doesn't take my pain seriously.

He asked me when all of this started..I told him the yr I went into tolerance wd from benzos.

All of this is so complicated and I don't know what is causing what.

10 yrs of telling my story and test after test with many docs telling me they don't know what's wrong.

My body is still very  hypersensitive to pain.

Can anyone relate...please?!

[[Ha...]]

I have it in my head not my legs. But can definitely relate 

[[Na...]]

I had stuff like that in my legs during acute, but it was probably gone in the first six months. A year at most.

The one I had that was long lasting - many years - was the muscles in the bottom of my feet (of all places) would randomly contract and release .... contract and release. Over and over. You could actually see it. Made it really hard to go to sleep when you laid down in bed and you could really notice it.

 

 

[[be...]]

2 hours ago, [[H...] said:

I have it in my head not my legs. But can definitely relate 

Ugh..sorry. I've also read many people have this in their heads.

I suppose you could have it anywhere in the body.

[[be...]]

2 hours ago, [[N...] said:

I had stuff like that in my legs during acute, but it was probably gone in the first six months. A year at most.

The one I had that was long lasting - many years - was the muscles in the bottom of my feet (of all places) would randomly contract and release .... contract and release. Over and over. You could actually see it. Made it really hard to go to sleep when you laid down in bed and you could really notice it.

I never had this in acute. I had painful stiff legs with twitching and numbness..still have the numbness. 

I also have it in both my feet as you describe. I watch my toes contract back and fourth all day long and the squeezing is awful.

Nathan..do think this could be dystonia ? Involuntary muscle movements..sounds like it.

What do you think it is?

Happy you got relief from it.

 

[[Ha...]]

8 minutes ago, [[b...] said:

I never had this in acute. I had painful stiff legs with twitching and numbness..still have the numbness. 

I also have it in both my feet as you describe. I watch my toes contract back and fourth all day long and the squeezing is awful.

Nathan..do think this could be dystonia ? Involuntary muscle movements..sounds like it.

What do you think it is?

Happy you got relief from it.

I know you're asking Nathan, but I think it's a form dystonia yes. I don't really see what else it could be. Our nerves are getting overstimulated 

[[be...]]

If it is dystonia I wonder if there's anything we can do to help relieve symptoms?

[[cu...]]

I'm 9 yrs out this month, beulah and I have muscle "twitches" in my calves-the worst-and most other parts of my body about every day. Sometimes they are painful, most of the time I just feel them jumping, twitching, as I write this my calves and feet are in constant minute, twitching motion.

I entered a wave about July 15 after a great 6 month window...no one understands, but I have shown people my calves before when it looks like they're filled with jumping beans and the look on their face is something.

I wish I had an answer.

[[be...]]

1 hour ago, [[c...] said:

I'm 9 yrs out this month, beulah and I have muscle "twitches" in my calves-the worst-and most other parts of my body about every day. Sometimes they are painful, most of the time I just feel them jumping, twitching, as I write this my calves and feet are in constant minute, twitching motion.

I entered a wave about July 15 after a great 6 month window...no one understands, but I have shown people my calves before when it looks like they're filled with jumping beans and the look on their face is something.

I wish I had an answer.

Oh ..so sorry you have it. That's how my started with twitches..then a few yrs down the road my legs became sticks of painful spasms..also my feet..always contracting.

I also wish we had answers.

This healing journey can be so so hard and very lengthy.

Healing as slow as a turtle 🐢 

[[Na...]]

I don't know if what we experience meet the technical definition of dystonia, but it is certainly "dystonia like".

Benzos are well known to be effective muscle relaxers. My theory is if you take them for any amount of time your body may make adaptations to try to counter the muscle relaxing effects (i.e. the body's tendency to maintain homeostasis). I think our problems occur once these adaptations are in place and we then remove the drug but the adaptations persist. So, now your body is doing something to try to increase muscle tone to counteract a benzo or z-drug that is no longer there, which results in hypertonic muscles.

Or I'm talking out of my hat and have no idea what I'm saying. All this is so much supposition and guessing. Mainly because the medical community either won't acknowledge the problems these drugs cause or if they understand they exist they simply have no interesting in investigating the underlying causes because there's no real money in it.

[[be...]]

Thanks Nathan.

For sure docs aren't doing any investigations to help us.

Neurologists are well known for prescribing benzos to their patients..why would they bite the hand that feeds them?

[[Ha...]]

11 hours ago, [[b...] said:

If it is dystonia I wonder if there's anything we can do to help relieve symptoms?

I'm seriously considering Lyrica, I need to be able to work. It's getting ridiculous now 

[[be...]]

12 hours ago, [[H...] said:

I'm seriously considering Lyrica, I need to be able to work. It's getting ridiculous now 

How long have you had dystonia symptoms?

I've read a few posts on here of people trying gabapentin for it..some it helps others not.

[[Ha...]]

9 minutes ago, [[b...] said:

How long have you had dystonia symptoms?

I've read a few posts on here of people trying gabapentin for it..some it helps others not.

3.5 years. The problem is it's my head and it's a struggle to do much at all. Mainly in bed with all sorts of shit going on. It has improved though, so need to hope it will resolve I suppose 

[[be...]]

2 minutes ago, [[H...] said:

3.5 years. The problem is it's my head and it's a struggle to do much at all. Mainly in bed with all sorts of shit going on. It has improved though, so need to hope it will resolve I suppose 

Good that you have improved..that's a good sign and it gives you hope that it will fully resolve.

Yeah..I understand. I'm 10 yrs out and recently got slammed with over the top symptoms..but the dystonia symptoms are the worst. It it would stop I could get on with my life.

Wishing you a full recovery.

[[Ha...]]

Let's hope eh @[be...]. I've sort of accepted it won't be a full recovery, but functional for more than the occasional hour would be nice 😁

[[be...]]

I hope so. My hope is that we all recover to a more functional level.

[[Ma...]]

A girl I know form Holland she has dystonia because of gabapentin 

[[be...]]

Ugh that's awful. I'm sure the benzos caused mine.

I blame benzos for all of my health issues.

I once had a healthy life..but got robbed of so much.

[[Kl...]]

Magnesium has helped me so much. At least 400 Mg a day of mag malate since it's the only one made from organic sources (fruits and veg) and seems to absorb quickly.  In fact I have to take it as sometimes the cramps and the twitching are intolerable.  Also movement and stretching.  As much as I possibly can and for my head,  resistance exercises.  Also, lately DMSO has helped relax and lesson the pressure on the side of my neck.  I use it on my legs for the neuropathy and it is definitely a calming agent.  No interference with GABA that I can find on the net.

Just my thoughts.  Praying for you all.

Klonkar

[[be...]]

I'm definitely interested.  Will you please share the names of both products and where you purchased them. I've tried different mag and they do offer a small amount of relief but I would love to try the natural one. Thanks for sharing 

[[be...]]

Do any of you have pain down the back of your legs..like your hamstrings are so tight feels like they will break? And so stiff.

[[Ha...]]

I tried cranialsacral therapy the other day. One of the strangest things ever. She put her hands on my calf's for 5 minutes and said wow, your nervous system is in severe distress. Feels like some sort of neuralgia and it seems concentrated in your optical nerve. I was like WTF? How can you tell that, I've got mad DP/Dr etc.

Revved up my symptoms a bit over the next couple of days but I feel calm and grounded, strange. Anyway she said it could take 2 or 3 sessions but thinks she can calm my nervous system down and release my head pressure etc. Will let you know how I get on 

[[be...]]

Yes..please let me know.

Hope it goes well for you.